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Need to express my feelings

Hello,

I needed somewhere to express my feelings and not be judged. I found out in June 2008 that I have lupus. My life has turned upside down since then like everyone here can relate to. It seems like every few months something else happens.

I am feeling very blue this weekend because I live in Minnesota and it has gotten cold and snowy outside and I have Raynauds so my fingers and toes have been freezing and we are only just starting the winter season. Then in the summer I can not be in the sun. I am just very frustrated. I feel like all I can do is live indoors. I am suppose to go shopping with my sister-in-law next weekend and it is at a outside strip mall and I am nervous about going because if it is cold out my toes and fingers will freeze and nobody understands.

I try to put on a good front for everyone but I am dying inside. I know there are many people out that are way worse off than me. But I was active and involved in so many things before I found out I had lupus and now I just feel like I am not needed anymore. I hate making plans because I will never know how I will feel.

I am sorry that I have went on and on. But I thought it make help to write it down and let it out.

Hi Deb! I am so glad that you came and vented here! You know we understand exactly what you are going through. I think most of us try to put on a brave front for friends and family and all the while inside we really wish they could understand what we really feel like. We really wish they could understand how our entire lives have changed and how we had no say so over it. Thankfully I found this place and it helped me because I finally found a place where people did understand. You are still needed, of that I have no doubt. We just have to learn how to work within the boundaries of our new normal.

Never say you are sorry for sharing your feelings. That is what we are here for.

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

I know how you feel, Deb. I've had to deal with many of the same issues since my SLE diagnosis in 2004. Sometimes I feel like a vampire, hiding from the sun year round. Like you, I was very active and involved in all sorts of things. I've had to find new activities that are within the limitations placed upon me, and I've had to seek out new friends more capable of understanding the unpredictable nature of this disease. It's not easy or quick, but you can adjust, adapt, and end up still enjoying life. There will always be people who do not understand, how could they, really. But, if you are up front and matter of fact with people about the reasons why you cannot always show up or plan ahead, then you've done your part. If they choose not to accept this, it's their problem, not yours. It probably sounds a bit cold, but it's the attitude I ended up having to take. You should not feel guilty about taking care of your health and doing the things you know you need to do, as well as avoiding those things that you should not do, in order to stay as healthy as possible.

Never forget that you have a safe place here where you can talk, and nobody will judge you. WHL is kind of a safety net. If at the end of the day things suck and we feel like nobody understands, we can fall back here and regroup, and know that there are people who understand exactly what we are going through. Sometimees, just venting is enough to recharge the batteries and strengthen a persons resolve to get up the next day, and get through that day even if it turns out to be a bad one.

Omg mate don't say your sorry for expressing yourself, we all need time to vent.

I really feel sorry for you i'm in the same boat with winter having raynauds myself and it's summer here now, so after 10mins in the shade the heat drives my skin mad, so i saw my dermo i've been banned from outdoors in the winter and when the suns shinning.

I've become house bound and feel like yourself as if your living in a bubble, this condition can be so cruel to the system and nerves, so i really do understand how your feelings and you did the best thing venting, as we're all here to support you.